1. Empowering Caregivers for ART Success in Children and Adolescents Guardian Session guidelines for PIH-EQUIP Teen Club Scale Up Lilongwe, Malawi
Prepared by Selamawit E. Deressa MD, MPH and Julie K. Parent, MSW

2. Outline Conducting the caregiver sessions Adherence
What is it and Why is it important
Adherence and Adolescents
Disclosure?
What is it?
Benefits
Barriers
Timing
Process
Impact
Information about the Teen Club model
References

3. Conducting Caregiver Sessions
Invite caregivers
Plan for 2-3 hours of open discussion using this PPT as a guide to facilitate the session
Find a private meeting area to conduct the session
Guardian Sessions can be done on:
The same day as teen club, but in a separate room, or on another convenient day
Provide refreshments for caregivers
Explain the benefits of adherence and disclosure, address barriers, answer questions and provide guidance
Discuss the availability of health care worker to assist with disclosure
Explain the basic of Teen Club model

4. Session Topic: Adherence
The following information can be use to guide the discussions with the caregivers: Adherence:
Why is adherence to ART important?
To understand this, caregivers need to know: How HIV replicates in the body and How ART works to restore immunity?

5. What does HIV do to the immune system?
When the HIV virus first enters the body, it crosses into CD4 (Immune Cells) and produces millions of new viruses
The CD4 cell then dies and the new viruses are released into the blood to infect new uninfected CD4 cells
This process continues in vicious cycle until the majority of the CD4 cells are gradually killed (Low CD4 Count)
Then the person becomes immuno-deficient and susceptible to opportunistic infections or AIDS related cancers

6. How Does ART Work?
ART is a combination of antiretroviral medications that work together to make the HIV “sleep”
ART does not cure HIV
ART only prevents the virus from producing more copies and destroying the CD4 cells
When the virus is asleep, the CD4 cells reproduce and increase in number
The immune system is restored again and the person will be able to fight diseases
To keep the virus “asleep”, ART must be taken at the right time, at the right dose, everyday for LIFE

7. What is Adherence to ART?
Adherence to ART is: taking the right dose, at the right time, everyday for life, and attending scheduled clinic visits regularly

8. Why is Adherence to ART important?(1)
In order for the virus to remain suppressed, there should be an optimal level of ART drugs in the blood
This can only be achieved by a very good adherence
Non- adherence leads to sub-optimal level of ART in the blood, which then allows the HIV virus to resume replication
Viral replicates in the presence of ART, results in genetic mutation which protects the virus from the current drugs
HIV virus can become resistant to ART very quickly
Only a few missed does, just 1-2 missed dose per week, has the highest risk of developing resistance

9. Adherence and Adolescents
Transitioning from childhood to adulthood is challenging, with personal responsibility, relationships and life plan
Adding HIV and adherence to this challenging time makes these years much more difficult
Children and teens need to understand the importance of adherence when they have been disclose of their HIV status, to help them adhere to medication
Approach adherence counseling with teens cooperatively
Work with teens to problem solve difficulties and help them achieve good adherence

10. Examples of Barriers to Adherence
Lack of family support
Lack of stable home environment
Moving homes frequently
Lack of money for transport
Boarding school
School holiday
Unexpected guests at home
Unexpected stays away from home

11. Adherence Counseling for Teens(2)
During adherence counseling for teens:
Ensure they understood why they are taking the medication
Praise their efforts and attempts at good adherence
Discuss and find out when they are most likely to miss their medication
Work with the teen to help the TEEN identify methods that are most helpful reminders.
The Health Care Worker or Lay Worker should offer suggestions, but the final choice must be made by the teen

12. Session Topic: Disclosure
Disclosure means revealing to a child or adolescent that either they or their caregiver is HIV+. It is a process of adjustment in understanding HIV and the life challenges it poses(3). Disclosure is a series of conversations over time4).
Non-disclosure
No information about HIV is given, even if the child asks
Questions are deflected, ignored or only general information is given
Partial-disclosure
Some insight is given about health status, but without mentioning HIV or ARVs
Full-disclosure
Honest and full information about HIV is provided and discussed

13. Benefits of Disclosure(3-7)
Greater understanding about HIV
Prevents accidental disclosure
Extended discussions about HIV in the family
Improved adherence and clinic attendance
Fulfilling the right to know about issues concerning personal health
Improved coping mechanisms and relief from the stress of hiding HIV
Active participation in treatment
Responsible sexual behavior
Making it acceptable to talk about HIV reduces stigma
Increased support to infected parents
Acceptance of HIV+ people

14. Barriers to Disclosure(3-7)
Parents and Caregivers:
Discomfort discussing HIV with children
Lack of knowledge, skills or emotional preparedness
Not wanting to worry or upset children
Perception that children will not understand or cope well
Expecting behavior problems or damaged relationship
Concerns that children will live in fear of death or dying
Feelings of shame and guilt
Fears of being judged by the child
Fears of stigma or rejection if the child tells others
Health Care Workers:
Inadequate knowledge or counselling skills

15. When to Disclose(3,4,7)
When a child starts asking questions about their illness or medications, it is a good time to start with gradual disclosure
Consider the child’s level of cognitive development and their ability to understand what is being said
Younger children should be informed gradually, accommodating their emotional maturity and preparing for full disclosure
School age (6-12) children should be told if they are HIV+ (WHO)

16. The Process of Disclosure(7)
Direct
To support children with adherence to ARVs, caregivers may tell the children directly that they are HIV+
Third-party or Assisted Approach
A parent or caregiver requests assistance from a health care worker or family members to help with disclosure

17. The Role of Health Care Workers(3,6)
Encourage testing of all family members (index case testing)
Support decisions on when to disclose - respect the family’s timing
Educate caregivers and equip them with skills and materials, including on how to answer uncomfortable questions (ie. sex)
Assist parents to deliver honest age appropriate facts about HIV
Encourage acceptance of status and adherence
Give detailed explanations of issues related to disclosure
Facilitate the process by assuring privacy, confidentiality and support

18. After Disclosure(3-7) Parents:
Relief from finally explaining the illness
Unhappiness, depression, guilt, regret, or uncertainty if children act differently after disclosure
Children:
A range of negative emotions including fear, anger, disbelief, sadness, or depression
Crying, followed by relief
Improved adherence and better attitude towards treatment

19. Teen Club Basics
PIH-EQUIP Teen Clubs are adolescent friendly ART Clinics that offer all the clinical services of a weekday ART Clinic but it is done on a Saturday to avoid disrupting school attendance.
Teen Clubs are peer support groups and information sharing forums for adolescents living with HIV (fully disclose of their HIV status)
Purpose of teen club:
To provide a safe, welcoming and nurturing environment
To develop and reinforce good habits and ensure healthy transition into adulthood
To provide quality care for adolescent living with HIV

20. Services provided during Teen Club:
Clinical Services: Vital Signs, ART Refills, Consultations, Viral Load Testing, Sexual Reproductive Health Information
Psychosocial Services: Adherence Counseling, Guardian Support (if needed), Partner Disclosure
Education: Staff, Volunteers and/or Mentors will prepare and provide one session from the Baylor Curriculum
Recreational Activities: Balls, Board Games, Music, Crafts, etc.
Refreshment: A snack and/or beverage

21. References www.who.int (Use of ART in Adults and Adolescents)
Baylor College of Medicine International Pediatric AIDS Initiative- Malawi Teen Club Curriculum(Part 1)
Guideline on HIV disclosure counselling for children up to 12 years of age, World Health Organization 2011
Patterns of Disclosure of HIV- Status to Infected Children in a Sub-Saharan African Setting Lara M. E. et al. J Dev Behav Pediatr May; 32(4): 307–315.
Disclosure of HIV status to children in resource-limited settings: a systematic review, Vreeman RC et al. Journal of the International AIDS Society 2013, 16:18466
A model for HIV disclosure of a parent’s and/or a child’s illness Gachanja and Burkholder (2016), PeerJ, DOI /peerj.1662
Determinants and processes of HIV status disclosure to HIV - infected children aged 4 to 17 years receiving HIV care services at Baylor College of Medicine Children’s Foundation Tanzania, Centre of Excellence (COE) in Mbeya: a cross-sectional study Mary S. Nzota, corresponding author Joseph KB. Matovu, Heather R. Draper, Rose Kisa, and Suzanne N.

22. Thank you!